|
|
|
Dear Community Voice member,
Welcome to the October edition of the Monthly Results Updates!
New to Community Voice? Welcome! In these digests you will learn about the impact Community Voice is having through recent opportunities that members have participated in. If you’d like to read about past projects the group has been involved in, click here to browse previous editions.
| |
Coronavirus (COVID-19) Related Projects
The CF Foundation has been closely monitoring the spread of COVID-19 to evaluate the potential implications for people with cystic fibrosis and their families. Visit cff.org regularly for the latest resources and updates from the Foundation.
COVID-19 Vaccine Survey
| |
In September, the CF Foundation deployed a survey to Community Voice and the CF community to learn more about the perceptions of people with CF, their families, and CF care providers in regard to a potential COVID-19 vaccine. Results from the survey revealed that while most people are likely to get a COVID-19 vaccine once it has been approved, questions remain about the safety of these potential vaccines. Most respondents also indicated that they will be looking to their CF care teams to help them decide about whether a vaccine would be right for them.
Based on these insights, the Foundation will continue to monitor the COVID-19 vaccine development process closely and look for ways to ensure that the CF community has access to information to help guide their decisions and protect their health during the pandemic. We look forward to providing updates as the research and development process continues for a COVID-19 vaccine.
| |
As the country began to reopen, the Foundation gathered feedback from Community Voice members on a potential tool to help guide discussions between people with CF and their care teams on which activities they can return to based on their personal risk tolerance and circumstances. From nearly 30 members who provided insightful feedback, we learned that:
- People with CF and their families would use this tool to discuss with their families (e.g., my teenager, the grandparents), and not just with their care teams
- The tool was helpful to stop ruminating by getting things out of the head and down on paper
- People with CF and their families are interested in learning from others on how to reduce risk on similar activities
Based on these learnings, the downloadable tool is now available on the Foundation’s COVID-19 Community Q&A page under section “7: Daily Life”, and has also been provided to CF care teams to share with their patients.
Thank you to everyone who participated in this project including Community Voice member Breck Gamel, mom of 3, one of whom has CF, who blogged about how she used the tool for her family. We hope the tool sparks #PeerHealthAdvice, encouraging our CF community to share how they assess personal risk and tips on how to make activities less risky.
| |
North American Cystic Fibrosis Conference
| |
The 34th annual North American Cystic Fibrosis Conference (NACFC) was held this month as CF scientists, researchers, care team members, and community members from around the world came together for the first time virtually to discuss and share ideas on the latest advances in CF research, care, and drug development.
Your work through Community Voice was:
- Highlighted during the second plenary, “Defining the New CF in the Era of Highly Effective Modulators”
- Check out the blog posts written by Community Voice members related to the plenaries:
- Acknowledged during sessions about CF-Related Diabetes, Psychosocial Impacts of Modulators, and COVID-19 specific topics
- Cited within abstract posters:
| |
Data Use Strategy Working Group & Survey
| |
The CF Foundation’s Strategic Plan highlighted the importance of high quality data and evidence to ensure that CF community members are getting the best possible health care. As part of the work in this area of focus, the Foundation deployed a survey through Community Voice to learn key insights surrounding health data sharing. Through 134 responses, we learned that:
- 72% of respondents indicate that their clinician team shared data with them during clinic visits and the data is most often used to make decisions about care and look at how their health has changed over time
- 84% of respondents use some method for tracking their health ranging from paper and electronic notes, to wearables, applications, and home spirometers
- 77% of respondents report learning about research at least once a month
Using the survey’s results, the CF Foundation will explore ways to make accessing clinical data easier and more useful. Survey respondents also had the opportunity to apply for the Data Use & Evidence Working Group, which will focus on developing a plan that outlines the next steps for the Foundation to support better CF care delivery and outcomes for all people with CF. Thank you to everyone who participated in the survey, and congratulations to the following Community Voice members on their new positions as part of this workgroup!
| |
Academic Research Highlights Document Review
| |
The CF Foundation is pursuing a wide range of research with the potential to cure cystic fibrosis and help all people with the disease lead long, fulfilling lives. In addition to working with companies to accelerate the next generation of transformative therapies for CF, the Foundation funds a wide range of academic research into CF treatment and care. Five Research Voice members helped review the new Academic Research Highlights flyer, which provides a snapshot of significant academic research into CF treatment and care that have been prioritized by the CF community such as studies on the impact of highly effective modulators, sexual and reproductive health, and treatments for nonsense and rare mutations. Thank you to Julie Lazzara, Kasey Raffensperger, Michael Amato, Molly Pam, and Dr. Xan Nowakowski who provided feedback on this resource and ensured it is lay-friendly and engaging!
| |
Cystic Fibrosis Sexual and Reproductive Health Resource Guide
| |
As people with CF live longer, healthier lives than before, more women with CF can take greater charge of their sexual and reproductive health. To help address the unique and emerging needs of women with CF surrounding this topic, the Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC) has developed an online guide to help educate patients and clinicians about issues that affect adult women with CF. Funded by a CF Foundation Impact Grant and developed by people with CF, including members of Community Voice, CFREsHC is pleased to share the Cystic Fibrosis Sexual and Reproductive Health Guide, which provides a wealth of information on many topics including contraception, pregnancy, menopause, and more.
For information on reproductive health for men and women with CF, please visit cff.org.
| |
|
|
|
|
